Update on my Dad

[LindseyRN]

I went with my Dad for his CT-guided lung biopsy today. The radiology nurse told us that from start to finish it would take about an hour and a half and that after the procedure is finished she would look for me in the outpatient waiting area. I decided that before I went to the cafeteria to grab some lunch, I would go to the hospital chapel to do my daily devotional. I had been in the chapel 15-20 minutes when I got a call from the radiology nurse saying Dad was fine, but the radiologist wanted to speak to both Dad and me together. When I got into the scanning room, Dad was on the table and the doctor was standing beside him. He told us that he is unable to do the biopsy because the nodule had shrunk by half. He said that he was worried he had reviewed someone else's CT scan prior to Dad getting on the table, so he scanned Dad both on his belly and his back to make sure he wasn't missing anything. Then he did some comparing with the first CT and he said there is no doubt it had gotten smaller. He said he believes the nodule is a resolving inflammatory process and will recommend that Dad has a repeat chest CT in three months to keep a close eye on it.

Dad is relieved. I am cautiously relieved...does this sound like it could be Wegener's-related? Would you be comfortable waiting 3 months for a follow-up scan?

[pberggren1]

Yes, nodules can shrink. I would feel comfortable waiting 3 months.

[LindseyRN]

Yes, nodules can shrink. I would feel comfortable waiting 3 months.

Yes, but if it were a malignancy, it wouldn't shrink so quickly, right? He is on prednisone 20mg daily (which I know wouldn't reduce the size of a malignancy) and methotrexate one dose weekly. I believe he has had three doses of MTX...could this drug shrink it if it were cancer?

[pberggren1]

I think it could shrink if it was cancer. So either way it is a good sign.

[Debbie C]

I think it could be wg related. I have nodules on my lungs that come and go and I am currently just taking 5mg pred.How is his blood work coming back,as far as sed rate and urine test? My kidney dr. today me people can get nodules over nothing and that he may even have them,so if it shrinking I wouldn't worry too much just watch for any signs.
Maybe the trip to the hosp. chapel helped !!

[ingemlb]

shrinking sounds good :)

[LindseyRN]

I think it could be wg related. I have nodules on my lungs that come and go and I am currently just taking 5mg pred.How is his blood work coming back,as far as sed rate and urine test? My kidney dr. today me people can get nodules over nothing and that he may even have them,so if it shrinking I wouldn't worry too much just watch for any signs.
Maybe the trip to the hosp. chapel helped !!

All his kidney function labs, including the urinalysis, were normal. We are hopeful that the nodule is WG-related, but we were told by both the rheumatologist and the pulmonologist that WG does not present in the lungs as a solitary nodule. (Although I have learned otherwise since joining here!). Also of significance is the single nodule's location and the fact that it appeared spiculated on my Dad's first chest CT.

We are so excited that it has shrunk by half, but now I'm wondering if the three doses of methotrexate he has taken caused that to happen. I asked the radiologist this question, he paused as if this was new information to him, and then said no.:unsure:

[ingemlb]

Glad for you and your dad. The only thing I can add to this discussion (only diagnosed a few weeks ago) is that I was told Methotrexate takes 4 to 6 weeks to infuse the tissues and become effective. Hence I am on higher dose of Prednisolone until the Methotrexate kicks in. When they started the Methotrexate and reduced the Prednisolone I immediately had a major flare up. So ... my experience would verify that it takes a while for the Methotrexate to take over. Hope this helps. Others will have more experience than me.

[Rose]

Shrinking is a good sign. It has not got bigger. I was followed up at 3 monthly intervals when they saw what looked like cancer. It did not change in size (no change in medication ) and after a year got the all clear. That was in 2009. I did recently tell my story of the "spirculated: lesion found in the same place in June 2013 which did worry my Pulmonologist but after senior radiologist compared all previous xrays and scans, I was told it was definitely scar tissue and no follow up was required. My Pulmonologist was pretty sure in 2009 that it was scar tissue when first discovered but she was very concerned i n 2013 by the scan report and admitted to me that the adjective spirculated was worrying her though she was confused as they also mentioned calcium deposits which apparently according to her, are not usually found together....spirculated indicating possible cancer and calcium deposits something else.

This is good news!!

Rose

[renidrag]

I wish I could shrink. Good for your Dad
Dale

[annekat]

I'm glad to hear that things are looking better for your dad, Lindsey. I can understand why you still have questions.

[LindseyRN]

I'm glad to hear that things are looking better for your dad, Lindsey. I can understand why you still have questions.

Thanks, Anne. As I am sure you know, it has been a roller coaster emotionally for all of us and physically for my Dad. Even though the radiologist said Dad's nodule is likely due to inflammation since it is now smaller, I am wondering if it could be a malignancy that shrunk due to the three doses of methotrexate he has taken. Then my next thought is, he has only taken three doses...and would methotrexate shrink a malignant tumor by half in just three weeks? Is my brain just trying to be irrational because we haven't received any good news up to this point?

[pberggren1]

Thanks, Anne. As I am sure you know, it has been a roller coaster emotionally for all of us and physically for my Dad. Even though the radiologist said Dad's nodule is likely due to inflammation since it is now smaller, I am wondering if it could be a malignancy that shrunk due to the three doses of methotrexate he has taken. Then my next thought is, he has only taken three doses...and would methotrexate shrink a malignant tumor by half in just three weeks? Is my brain just trying to be irrational because we haven't received any good news up to this point?

It does not make sense that 3 days of MTX would shrink it that much. How far apart were the scans?

[MikeG-2012]

Thanks, Anne. As I am sure you know, it has been a roller coaster emotionally for all of us and physically for my Dad. Even though the radiologist said Dad's nodule is likely due to inflammation since it is now smaller, I am wondering if it could be a malignancy that shrunk due to the three doses of methotrexate he has taken. Then my next thought is, he has only taken three doses...and would methotrexate shrink a malignant tumor by half in just three weeks? Is my brain just trying to be irrational because we haven't received any good news up to this point?

I don't know about methotrexate, but I do know that time and prednisone do heal lung lesions. Mine are shrinking due to the time and pred. If given proper treatment for the Wegeners, lesions from wegs will heal over time. My original lesions and lungs that looked like broken glass (multiple granulomas), and all those healed where they are not showing up on x-rays and CT scans.

(Oh, and Phil, three doses, not three days.)

[pberggren1]

Oh, so the mtx is being taken orally but only once a week? If that is the case then 3 weeks could bring the lesion down in size quite a bit.

[LindseyRN]

It does not make sense that 3 days of MTX would shrink it that much. How far apart were the scans?

His first CT was January 24. His PET scan was February 18. Then he was CT'd yesterday, March 5.

As Mike also clarified above, he has taken 3 doses of MTX (4 tablets once weekly).

[pberggren1]

That could very well be then Lindsey. How is your dad feeling overall this week? Any new symptoms?

[LindseyRN]

He feels good. No new symptoms, just his sinuses running like a faucet. I made him take pictures of a couple different mucous balls his nose gave birth to and then text them to me. I then had Walgreens print them out and I gave them to my Dad yesterday. He is going to show his rheumatologist at his appointment tomorrow.

So would you imagine his pulmonologist still wanting him to have a lobectomy?

[pberggren1]

Does your dad do nasal rinses?

Ya, I can't see the lung doc wanting to take out part of his lung really. I would get a second opinion.

[MikeG-2012]

He feels good. No new symptoms, just his sinuses running like a faucet. I made him take pictures of a couple different mucous balls his nose gave birth to and then text them to me. I then had Walgreens print them out and I gave them to my Dad yesterday. He is going to show his rheumatologist at his appointment tomorrow.

So would you imagine his pulmonologist still wanting him to have a lobectomy?

Before anyone did that to me again (I had a lung biopsy 2 years ago), I would get a second opinion, or see a Wegener's specialist somewhere. Your Dad's immune system is now compromised, and if he's been on pred for any length of time now, he is going to heal slower than normal. Plus, if the nodule is shrinking, because of the treatment plan that he is on for WEGENERS, then maybe, just maybe it is caused by the wegs and not a malignancy?

[LindseyRN]

The pulmonologist hasn't actually said he wants to go ahead with the surgery. Dad is scheduled for a follow up with him on Wednesday for biopsy results, but of course he is still going to the appt. even though his biopsy was cancelled. I'm just wondering if he will still want to take it out because the nodule could not be biopsied...like "I don't know what it is, so it's better to just remove it altogether," know what I mean?

If the pulmonologist does want this, I feel like that is a drastic move for a lesion that has shrunk by 50% in 6 weeks? (And, yes, I know I am worrying about this prematurely.:razz:)

[MikeG-2012]

The pulmonologist hasn't actually said he wants to go ahead with the surgery. Dad is scheduled for a follow up with him on Wednesday for biopsy results, but of course he is still going to the appt. even though his biopsy was cancelled. I'm just wondering if he will still want to take it out because the nodule could not be biopsied...like "I don't know what it is, so it's better to just remove it altogether," know what I mean?

If the pulmonologist does want this, I feel like that is a drastic move for a lesion that has shrunk by 50% in 6 weeks? (And, yes, I know I am worrying about this prematurely.:razz:)

Someone has to be the bulldog Lindsey. If it is one thing I've learned with this stupid disease is that there is no ONE textbook. We each are writing our own as we go along. As authors of our own history, we need to make sure we are our strongest advocates for ourselves and/or our loved ones. So go get 'em! (-8

[LindseyRN]

Someone has to be the bulldog Lindsey. If it is one thing I've learned with this stupid disease is that there is no ONE textbook. We each are writing our own as we go along. As authors of our own history, we need to make sure we are our strongest advocates for ourselves and/or our loved ones. So go get 'em! (-8

Oh, I am good at being a bulldog, Mike! :biggrin1: Thanks for the support!

[annekat]

I don't know much, but my intuition says that if the mass has shrunk that fast on 3 weeks of MTX, it is a lot more likely to be a Wegs lesion than a malignant tumor. I know that the doses of chemo given for cancer patients are a lot more than what we get for WG, so I imagine his dose of MTX would be considered very small to shrink a cancerous tumor. I had scattered smaller lung lesions and they were shrunk over a period of weeks with CTX, which is usually preferred over MTX for lung involvement. So if the MTX is shrinking this lesion that fast, it would seem he is doing quite well. This is looking at the best possible scenario, I guess, which I hope turns out to be true, if it has been established that he has WG. The last thing we need is for him to have a malignant tumor on top of Wegs.

[Alysia]

pred alone cleared my lungs. 60 mg. so maybe it is the pred. anyway shrinking is good news :thumbup:
how much pred did he take so far ?

[annekat]

pred alone cleared my lungs. 60 mg. so maybe it is the pred. anyway shrinking is good news :thumbup:
how much pred did he take so far ? I was on 60mg. pred, too, so can't be sure if it was the pred or the CTX or both. But mine were small lesions. I'd think a big mass, or nodule, or whatever they want to call it, would take more meds to shrink than a bunch of small lesions. I don't know this, though.

[LindseyRN]

pred alone cleared my lungs. 60 mg. so maybe it is the pred. anyway shrinking is good news :thumbup:
how much pred did he take so far ?

He has been on 20mg daily for weeks now. He is at the rheumatologist's office right now. I am hoping she will increase his medications to help his sinuses.